Autism & the toll of trying to keep it together

As my kids have grown older, I’ve noticed the increasing toll that trying to “keep it together” takes on them.

At home, they can be themselves. However, when in the company of others, they feel the pressure to fit in and hide their real selves.

They are becoming more aware of their innate differences as individual on the autism spectrum. As a result, they are trying harder to fit in, keep it together and be more like their peers, particularly in public.

It’s hard as a parent to watch your kids struggle. It’s even harder to see them struggle against their very nature to fit in. Which is what my kids are doing by attempting to mask their autism and pass as their peers.

What is passing or masking?

If you’re not familiar with the terms, “passing” or “masking,” they refer to neurodiverse individuals trying to appear to be more like their neurotypical counterparts.

In other words, it’s pretending to be okay when you’re not always okay. It’s trying to minimise the quirks of your natural self so you can fit in better with your peers.

It’s putting on a mask, keeping feelings hidden and trying to get through each day, without incident or embarrassment.

What does passing or masking look like?

My kids have been passing for years now. Just like most other individuals on the autism spectrum.

They spend each day at school, using all their energy to be social, follow instructions, keep their emotions under control and minimise their natural inclination to stim.

They fear getting in trouble from their teachers and they are scared of looking different to their classmates. So they spend their days, exhausting themselves, trying to be more like everyone else.

When they come home, they are free to be themselves again. They feel safe at home, free from the judgment of their peers in the playground. They often release their emotions in a storm of anger, sadness or frustration.

Or they shutdown completely, retiring to their room so they can avoid any sort of interaction for a while.

Then, they steel themselves to do it all over again the next day.

It’s an exhausting way to live.

What toll does trying to keep it together take on our kids?

I’m ashamed to admit that it’s only during the last year that I’ve understood the toll trying to keep it together takes on my kids.

It started when Gilbert started hiding his “swingy things” away from visitors to the home. He didn’t want them seeing his sensory tools. He didn’t want to be judged for being different. Even though those tattered lengths of material mean the world to him.

It escalated as he tried his best to do well at school. While I was relieved that he didn’t meltdown or display behavioural issues, it meant he came home exhausted, mentally, emotionally and physically.

Passing has gone to a whole other level this year with Gilbert’s move to high school.

I didn’t realise my son cared as much about what others think of him but it’s a huge factor in his behaviour this year.

After a particularly tough weekend recently, he begged to stay home from school on the Monday as he feared he wouldn’t be able to keep his emotions in check.

On the one hand, I was proud to see him recognise his emotions and realise he would struggle to self-regulate at school. This is something we have been working on for a long time and it’s great he has learned to do this.

On the other hand, my heart broke for the effort he feels he needs to expend every day, in order to look more like his peers. I was devastated he felt so desperate for relief that he couldn’t bear to leave home.

It was a painful reminder of the lifelong struggle autistic individuals face to live life in a non-autistic world.

What does this mean for us, as parents?

Like you and all other parents out there, I want the best for my kids.

I know our world, as it stands, is not made for autistic and neurodiverse individuals. I know my kids will have to work harder to make their way in it. I know I will have to work harder to guide them through it too.

But how much of themselves should my kids suppress, in order to live in a neurotypical world?

Is it fair for them to pretend to be someone else for most of each day?

Is it fair they need to hibernate over the weekend to recover so they can do it all over again during the week?

How far should I push them, as a parent? When does it become too anxiety-inducing? When does it become too big of an ask for our kids to keep trying to fit in?

Clearly, I don’t have any answers. Just lots of questions!

But I do know I need to step up and try to do more to smooth the way for them.

So, what can we do, as parents, to help our kids?

I don’t have a lot of answers, but these are the strategies I’m using to help my kids better cope with the world around them. They might be a way forward for you and your kids too.

Put yourself in their shoes. Try to understand the stress of operating in a world which you don’t understand and which doesn’t understand you. Just think about that for a moment. It would be unbelievably difficult, stressful and scary. No wonder home becomes a safe haven.

Be patient and kind. It’s not fun being the target of your kids’ anger and stress each day. But, realise YOU are their safe place. They’re only unloading on you because they know you won’t judge them and will always be there for them. So, keep this in mind when responding to their outbursts.

Give them space. If you can, reschedule plans, postpone after school activities and let them find calm, peace and safety. Give them the opportunity to be themselves again and to reset themselves after a long day. Remember they will be exhausted in every single way.

Teach them strategies to cope. Concentrate on helping them identify and self-regulate their emotions. Encourage them to work on ways to reduce anxiety and stress. Address their sensory needs. Give them ways to express their experiences each day. Help them develop tools they can use to help themselves.

Talk to them about self-identity. Growing up challenges all children. Let them know they are not alone. Talk to them about autism, neurodiversity and being different. Reassure them that there is nothing wrong with them. Help them come to terms with their diagnosis and encourage them to self-identify, when they’re ready to do so.

Have you noticed the toll that trying to keep it together takes on your kids? How have you been able to help them?

7 Responses

Oh Gosh! How exhausting for the kids and for you. Starting high school is hard enough let alone when you have other things going on. You’re strategies are brilliant. I’m sure they will help a lot of other families.Renee Wilson recently posted..Just Like Molly – book review + giveaway

I think we all do this to an extent. No-one is ever free to be completely themselves . However in no way do I dismiss this for these people (including your children) as i used to notice this with many children as a teacher/principal. The comment from parents “how come she is so good at school, then when she comes home she loses it” is much much more common than many realise. Kids (and adults) only feel most secure to be themselves in their home (if that is the safe place) and it’s where they/we can be who/what we need to be. It’s very important to let home be that sanctuary. I do think you have opened up the conversation on something that both educators and parents need to know. Thanks Kirsty. Denyse #teamIBOTDenyse Whelan Blogs recently posted..Casual Teacher Ready To Teach! 2017.48.

It’s a hard one. We are only just stepping on the assessment path and have had our first taste of this.

Late last year I bought an oral motor sensory chew as my boy was chewing clothes, not constantly, but let’s say enough. It went to one preschool, not a problem. More accidentally than anything else it ended up in his other preschool setting and it didn’t come home. When I asked him about it the first time he said he wasn’t allowed to have things around his neck, fair enough but it’s got a safety release clip. Next time the story was it was taken off him because him chewing it would make the younger kids put toys in their mouth. I spoke to the teacher and she was accepting only to the point of having it in his bag and they would get it if he started chewing his clothes. As of this week when I remind him that he can put it on and chew on it when I find him chewing his clothes he has gone from a gleeful “that’s right” to a guilty look abruptly taking the cloth out of his mouth and shaking his head.

A couple of weeks later she reported that he has been scratching people when I really thought it through I felt a little angry about the fact she had taken a tool he uses for self-regulation and made it a big deal.

I’ve noticed it more this year as Mr 7 has gone into year 2. The first term is usually the hardest as he gets used to a new teacher. Giving him a safe space to get those emotions out has helped him so far, but I do worry about how his needs will change as he gets old.Tegan recently posted..ADHD is not just bad behaviour

How lucky your children are to have such an informed and caring parent – who obviously knows a lot about autism and the effects it can have on a child trying to fit in. I think we all try to fit in at various levels, but not to the point of exhaustion as you intimate in your post. Well done to you for putting it out there – I’m sure this post will help others in the same situation. #teamlovinlife

Excellent post Kirsty. This is all familiar stuff to me. My ASD son would do the same. He could never go to after school care as he was exhausted from being ‘social’ during the school day. When he got home from school he would go to his room which he likes dark (still does) and lie on his bed bouncing a tennis ball against the wall. Drives us nuts but it is how he de-stresses. To this day he still does this. He is now 23. I’m so grateful to you Kirsty for putting this information out there not only for parents of autistic kids but for everyone to help raise awareness and understanding. Thank you! #TeamLovinLifeMin from Write of the Middle recently posted..Taking Stock – March 2017